Reflections on Student, Service User and Carer Involvement in Social Work Research

Abstract

Introduction Researchers are increasingly being asked to include patient engagement in their research programs. Some organizations , such as the UK-based Involve [1], have begun to organize approaches to engage patients in research. This article provides a perspective on front-line involvement of a patient and caregiver in a research project focused on integrated care. My name is Frank Hanson and I have been diagnosed with multiple chronic medical issues. I have been married to my caregiver Rhene for over 50 years and we are both in our seventies. In this article we offer our perspective as patient and caregiver advisors engaged in the multi-year iCOACH (implementing Integrated Care for Older Adults with Complex Health needs) research project. Based on our experience thus far, we have provided some suggestions for including patients and caregivers more effectively. We also share a few of our thoughts and suggestions after several decades of navigating our way through the Ontario health care system. Participating as a Patient and Caregiver in a Research Project We were first engaged as participants in a small research study that included interviews with patients aged 65 and over living with multiple chronic conditions, as well as their caregivers and physicians, to ask about goals of care [2-4]. We were subsequently asked to participate in future research, and we agreed. After a meeting with the Principal Investigator to discuss what was being asked of us, we were pleased to participate as patient and caregiver advisors. We have been recipients of many benefits of the health care system, and this venue provides a way of "giving back" to society. This research also provides an opportunity for us to share experiences and help improve the health care system for others. We hope to further advocate for the patients' interest and ensure accountability, providing a practical perspective to the research study. We have participated as the sole patient and caregiver representatives in quarterly meetings with the overall team of iCOACH investigators. There have also been two three-day, in-person study team meetings. From time to time we are called upon to share our thoughts with the team, usually on specific areas that involve the patient/caregiver experience. We have also provided direct feedback on patient and caregiver surveys and interview guides used by the team. How to Ensure a More Successful Engagement of Patients and Caregivers on a Research Team The experience for all parties has been a continuous learning curve and is evolving. Although our experience has been mostly positive, there have been a number of challenges. This is an entirely new experience for us and there has been much to learn in order just to participate. It has also been a challenge for the professional researchers to engage lay people in their research. We offer here some suggestions for ways to improve the present platform to become more meaningful. At the outset of the study, we felt that we could not fully participate in team meetings because w...

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